Wednesday, September 30, 2009

We spent a good hour talking to the doctor and examining Ahren this morning. He took a very detailed history and asked many, many questions. I love this doctor, we never feel rushed and he is so good with kids. Here is what we came up with:

1) His overall muscle tone is low but low/normal. It is the same all over his body, not weaker in any one spot.

2) He has made tremendous progress in this year. Absolutely amazing progress.

3) Although his muscle tone is acceptable now, his coordination and balance are not. While we were talking he did one of his typical keel-over moves. He was only turning around while standing and he lost his balance and fell. He was able to catch himself with his hands and avoid hitting his head, so his reflexes are good.

4) The doctor feels that it is not a muscle issue, but maybe a brain issue. Not like CP where parts of the body are affected, something more global.

5) We have a referral to a Pediatric Neurologist for a full work-up. MRI, EEG, blood work, and some other neuro mumbo-jumbo.

6) The doctor agreed with me that there seems to be 'something' not right. Not horribly wrong but just off. It felt good to be validated for my worries. Nanny agrees with me but Chris doesn't see it. That is so frustrating. I figure if all I find out is that he is just quirky but fine, then I have bought myself peace of mind.

And Ahren? He has declared that he wants a Baby Brudder. That's all he talks about. Hmmm....

Monday, September 28, 2009

As a parent I spend a lot of time trying to import the idea of consequences onto my children. Kids are not born understanding the concept and some grasp it quicker than others. Some people never learn the lesson.

Today I was struck by the inherant inequalities in natural consequences. One bad deed should result in an equal and undesirable consequence, but life is just not like that. Here is my case in point.

Example #1) The mother of a child my younger daughter was friends with for several years has set a record for un-punished illegal offenses. Here is a short list of the most heinous of her actions:

a. used her toddler daughter in a stroller to shoplift

b. embezzled money from an employer

c. has driven without a valid drivers license for 8 years, been pulled over multiple times

d. failed to send her two teenage children to school resulting in truancy charges multiple times

g. 5 or 6 evictions from rental residences with tens of thousands of dollars in un-paid rent

h. much, much more that is beyond comprehension

This woman has not paid any fines, served more than a few hours at a time in jail, or been made to pay the consequences of her actions because she simply ignores the court dates and if they do catch her she gets released right away because these are 'minor' offenses. No room in the jails for her!

Example #2) A sixteen year old boy from my daughter's high school attempted to pass a slower moving vehicle in a non-passing zone at 4 pm yesterday afternoon and hit a large SUV head on, killing him and injuring 5 others in the crash.

The boy made a small, stupid mistake, probably based on lack of experience and he paid with his life. The adult woman has made a lifetime of calculated disgressions and yet she suffers almost nothing.

Tell me, how do I teach my kids consequences? This set of examples confounds me. How do I explain this? My older girls know both stories and we have talked at length about both. They seem to sense the truth of right and wrong, but that might be in spite of the evidence they see around them. How do we, as parents, make our children understand? That right and wrong are not about who gets caught or who suffers, but about how we eventually see ourselves in this world? Are we proud of who we are? Did we live each and every day trying to be our best? Sometimes parenting simply overwhelms me. I should say, the thought of GOOD parenting overwhelms me. Bad parenting is easy.....

Sunday, September 27, 2009

Remember when I mentioned that we were down one toilet after a toddler lego flushing experiment? it happened right before a weekend when Chris was scheduled to be out of town. In addition to being on my own with the munchkin crowd I was also getting sick. My solution was to turn off the water to the toilet and tape the lid shut. I left it this way until both my health and my mental fortitude were aligned. (Calling a plumber was out of the question because I am just that cheap!)

Yesterday I tackled the job. New wax ring? Check. All the water drained? Check. Old towels? Check. Various tools? Check! By the time Chris found me the toilet was lying on the floor and I had already removed 5 large plastic blocks from it's inner workings. (Chris is used to such behavior from his spousal partner and managed to contain himself to one small sigh and a slight eye-roll...hee!) We removed four more blocks and then I removed the old wax and caulk, cleaned up the floor, situated the new wax ring and placed the new bolts. Here is where I failed, though. I couldn't lift the darn thing back up onto the site myself. I may have tools, but muscles..not so much. Chris lifted it back on and I re-attached everything. I turned on the water and fired that puppy up. No leaks!!!

I am woman, hear me roar!

___________________________________________________________________

Wow, blogger went absolutely bonkers with this post. It took me quite a while to delete all the un-finished versions of this post that it uploaded. Seriously, I was very proud of my toilet repairing skills but not THAT proud!

Wow, the difference the new floor makes is incredible. The room looks huge. I need to get an area rug to help reduce the noise. It looks like wood, right? It's not. Not laminate, or Pergo or anything else related. It's some sort of space age polymer that is indestructible. It has only been available commercially for industrial use until recently. In fact, you may have seen some version of this on the floors of Wally Worlds. (It comes looking like tile, wood, etc) I figure if it can withstand the multitudes of mega-shoppers it can stand up to my kids.

It's textured like wood on the surface, too. Water won't hurt it, it won't stain or chip or dent. It comes with a 20 year guarantee. If it ever does get damaged, say you drop an anvil on it, they use a heat gun to loosen the glue and then just glue in a new piece. We went for the low-shine variety. It's less slippery and easier to keep looking nice. it took 6 hours to remove the carpet, prep the concrete and install and trim about 500 square feet of space. This particular variety/brand is called Van Gogh. I am in love......

Thursday, September 24, 2009

1) I am sick. Again. That is the downside to working with kids and having your own four kids in four different schools. I am a veritable viral magnet. I never knew snot came in so many colors.....TMI?

2) Ahren flushed large plastic lego blocks down the toilet making it inoperable, the day before Chris went out of town. It is now taped shut and waiting for rescue.

3) Levi was taking a bath and decided to pour the entire, brand-new super-sized bottle of baby soap into the tub, then turn on the shower sprayer on causing bubbles to multiply like the swine flu bug.

4) Took the kids to the dentist and Ahren has 2 cavities that need to be filled, but he is not yet cooperative enough to have them filled without sedating him. Do I wait? Do I let them knock him out just for 2 fillings? Ugh! if I ignore it will they go away?????

5) When I took my current job I was the fourth Vision Therapist on staff. Due to odd circumstances, I will soon be the ONLY therapist on staff. To say I am a bit anxious about that...well, the word understatement comes to mind. I love what I do but I only have a surface knowledge of all that is therapy. Luckily they want to send me to California for training. Dana, sweet sister of mine, can I bunk at your house for a few weekends? I will bring brownies and lots of hugs!

6) Tomorrow, bright and early, a man named Oscar is coming to make a huge mess in my house. We are tearing out all the carpet in the main living areas and replacing it with an industrial product that looks just like wood but is virtually indestructible. Seriously, this stuff comes with a 20 year guarantee. I am thinking of having them do all the floor and halfway up the walls then installing a giant floor drain. I could just pull the hose into the living room and do a quick wash up!

7) I am OK with waiting on Ahren's testing. It is scheduled for next Wed. We will have some results within a couple of days, but the genetic testing will take a few weeks to get results. On the other hand, I find myself watching every little move he makes. He was riding on the side of the grocery cart the other day and just couldn't hang on. His little arms just shook and he had to hop off. Another time he was standing next to me while I was on the phone and when he looked up at me he lost his balance and fell down. He was just standing there and toppled over. And then there is his goofy, oddball run. he runs kind of sideways, with his left leg not bending much, and his arms pumping like there is no tomorrow. This kid is either the goofiest little sweetheart around or seriously messed up. My dear friend Candy called him a 'Weeble Wobble' and that is the perfect name for him. Sweet, chunky and prone to tipping over.

And now, I have a date with a bottle of serious cold medicine that will hopefully leave me senseless for many hours. Adieu, adieu, adieu, to you and you and you.

Sunday, September 20, 2009

Thanks to some very wise and thoughtful commenters I have a better idea what might actually be going on with Ahren. That and good ol' Dr. Google. Being a research scientist is almost a curse when you hear something like that. My mind went to the worst case scenarios, lack of successful medical interventions and no cures.

But....he just doesn't fit the presentation for muscular dystrophy. There is definitely something, but not that. He was diagnosed as having Hypotonia (very low muscle tone) when he came home. That can actually be caused by many, many things. Some are no problem, others are devastating illnesses. The fact that our interventions have improved him so much is a plus. The fact that some issues are re-surfacing or getting worse plus a couple of new things was the big red flag.

Here is what I am thinking. As Urban Blonde pointed out to me, he has all the symptoms of Ataxic Cerebral Palsy. This is a non-progressive disease caused by some sort of injury to the brain (like very poor pre-natal nutrition....) It is non-progressive but CHANGING. Especially during childhood and periods of significant growth. Have I mentioned he grew over 6 inches this year? That alone is enough to cause a huge regression. His muscles are just a lot slower to catch up. Another symptom is loss of bladder and bowel control, and who do we know who has been wetting his pants a lot and recently also pooped his pants 4 times? you got it, Ahren. The times he has pooped his pants it's like he doesn't even know he did it. The muscles just let go and he has no control. Geez, how bad do I feel for getting so upset at him? Luckily I didn't let it show on the outside most of the time, but still. Remember the day I made him wear the wet pants and he hated it? Yeah, not my most stellar moment. Oh well, I need to focus on moving forward and not dwell on mistakes. Learn from them, yes, but dwell on them? Nope.

He is a very smart little cookie, and he is very adept at using his charms to get people to do everything for him. He won't feed himself if he can convince someone to feed him (which he does ALL the time) He won't dress himself or even pull his own pants down or up. He won't climb in the van by himself or jump out. His pre-school teacher sent a note home telling me he didn't like to do anything for himself and she was going to work on getting him to do things. (Good luck with that one!) This is a typical compensation mechanism for CP kids. He just happens to be a pro at it. You should see Nanny spooning scrambled eggs into his mouth. He is one happy camper!

We will still do all the testing but I am not worried anymore. He is just my sweet, beautiful quirky little boy. Now I need to go wipe the slobber off his face and put a band-aid on his skinned knees.....

Friday, September 18, 2009

When Ahren first came home he was 2 years and 9 months old but was still very much a baby. He still took a bottle every 4 hours. He had not started potty training. He didn't say many words (in spanish or english) and he still seemed babyish in many ways. I didn't mind, I got to enjoy that last little bit of babyhood after having missed so much of his life.

But there was more to it than just baby-ish-ness. (I made a new word!) He had very poor muscle tone. The foster mother had been worried about him walking so late (22 months) and falling constantly and they had taken him to an orthopedist. The ortho put him into special orthotic boots to stabilize his feet and ankles. Those helped but still, there was more to it.

I took him to an ortho here and he was very concerned. He said he had never seen a child with so little muscle tone. His little legs would just flop all over and you could literally wrap them around his head with no problem. We started working with him every day to build muscles and fed him a diet high in protein. In three months he grew almost 4 inches, began to gain many more skills involving his large muscles and the ortho thought he was looking great. The improvement was amazing. The doctors orders were to keep up the good work and he would see us in a year.

We saw his regular doctor the other day (who has also been following Ahren closely) to get his flu shot and I mentioned some things that I have noticed. Here is what I mentioned to the doctor.

1) He drools all the time and seems to have trouble chewing and swallowing.

2) He has been having trouble getting out of bed and when he first gets up he walks with a very stiff-legged frankenstein like movement.

3) He has been falling down a lot, even when just standing still

The doctor got an odd look on his face, and then he said something that hit me like a punch in the gut. He said we need to test him for muscular dystrophy. I think he said some other things after that, but the odd buzzing in my head drowned it out. We now have an appointment in 10 days for a complete work-up. Genetic testing, blood work, and whatever else they can think of. And then we wait for a few weeks for the results.

I am concerned but not freaking out. Yet. My mother's intuition tells me there is something going on. He is almost 4 years old and he falls down trying to pee in the potty. He has a funny, awkward gait when he runs. He drools like a teething baby. I guess the thing that made me begin to think there might be something going on is that these things had gotten better but are now getting worse. All along I had thought he was just behind in development because he was never allowed down on the ground and the foster family did everything for him. But they had also been concerned, so even back then they thought there was something wrong.

Sunday, September 13, 2009

Oh what plans I had. A get-together with good friends and lots of kids at the beach house. One last hurrah of summer, complete with surf, sand and sun. I should have known it wouldn't work out when I realized I had planned it for the one year anniversary of Hurricane Ike devastating the island.

Over the past couple of weeks I have bought additional life jackets for small munchkins, carefully planned food menus that included gluten-free and lactose intolerant dietary needs. I bought food, decorations and what not. I planned how to transport people from the beach to the house to the pool, etc. My family all had assigned jobs. We were ready.

For NOTHING. A huge storm front moved in and Saturday was a mess. We had to cancel. I am so sad. This is all I was looking forward to for weeks. I wanted so badly to show my friends a good time and enjoy them and their families having fun.

We ended up going down there Saturday morning. Chris had a job he had to visit on the island so at least he had to be there. We also had some little projects we needed to do and a whole van-load of party supplies to deliver. So off we went. In the rain. We ended up visiting moody Gardens to keep us all from going insane stuck in the house. It was...um...OK. Sunday morning dawned clear and sunny. We headed out on the jet skis to do some tubing and immediately ran into trouble with one jet ski. We had to tow it back to our dock and call for the dealer to pick it up. So today I did laundry, dishes, bathed small smelly children who had jumped in the canal and made beds. Woo-hoo I am living in the fast lane.

So this was the weekend that wasn't. High expectations and low returns. I think I will go to bed now. Sigh.....

Monday, September 07, 2009

Did you know that the sense of smell it the most powerful sense for invoking memories? It is very powerful and can bring out memories that otherwise would lay deeply buried in our minds for our whole lives.

I had one of those yesterday. Suddenly, I smelled my grandmother's house and all the memories came flooding back. My grandparents lived in a two story victorian-ish house in a tiny town in rural Iowa. It had a wrap around porch and a doorbell that was a little handle you pulled out that created this horrible buzzing sound. They always had a cat named Tom, even though over the years it was actually several different cats both male and female.

The house was heated by radiators and I used to like to take my cheese sandwiches and lay them on the radiator to make them warm. There was no furnace fan and instead there were open iron grates in the floor of the second story that allowed warm air to rise up from the first floor. Those open grates were the source of much fun. Us kids would lay on the floor upstairs and spy on the adults downstairs. We watched and listened and giggled with delight at hearing their 'secrets'.

The backyard was big and had a large berry patch. I don't remember what ind of berries but I remember they were full of stickers and I stayed away after my first encounter with them. The neighbor had a large pop corn cart in their backyard and it fascinated me. I can't even remember how many times I was told to get back ion the yard and stay away from the pop corn cart. It was like something out of the circus!

My grandfather would take us with him to walk to the local store. The town was so tiny that the 'store' was a tiny grocer with only 2 aisles. They carried the basics, nothing more. I can still remember the pride in my grandfather's voice as he introduced us, his grandkids from the big city. he always let me walk along the top of the brick retaining wall, and I felt so big and brave. My Mom never let me do anything so dangerous. (In hindsight, the wall was probably about 2 feet tall and he held my hand)

The room my sister and I slept in had sloping ceilings. At the time I had no idea why the ceilings were like that. I thought they were the coolest thing ever. I could lay in bed and reach up and touch the ceiling. There was also a large ceramic cat. It was creepy and realistic with glittery eyes and so cool. We loved that cat!

But the coolest thing by far about my grandparents house? There was a locked room at the end of the hall upstairs. Oh how our imaginations ran wild. The story was that the room held a friend's furniture and they were storing it for him. We figured that the room actually held a criminally insane relative, shackled to the bed and kept secret form the whole world. At night, we would lay and listen to see if we could hear the chains clank or moaning or a heavy foot fall. Each time we would get close to the door, our breath would catch in our throats and we would feel a shiver of fear up our spines. We would dare each other to touch the door. To look through the key hole. To listen at the door.

It's funny, my grandmother didn't really like kids all that much and she tended to be a bit harsh, but I have lots of very fond memories of visiting their house, of my grandfather, and the times we all spent there.

Friday, September 04, 2009

Well it looks like Ahren's phase is getting much better. I have the sneaking suspicion that all the recent changes were behind the un-acceptable behaviors. And I don't mean just the pee-ing issues. He was also an argumentative, growling, spitting, kicking little ball of issues. He has never been like that so I was caught completely off guard. We stuck to the rules, staying consistent with him (as in: known consequences each and every time he did something like spit or kick) We didn't punish him for the potty mishaps other than the day he wore wet pants for an hour. (Hey, I had a weak moment...I'm human) Yesterday and today...no accidents. No fits. No time outs. Whew! And he is doing great in his pre-school class. In fact, I thought we had a little genius on our hands when he brought home the most perfectly written letters...until I found out the teacher 'helped' him after he gave her the big ol' doe eyes.

Levi now loves his school. In fact, he told me that the wigglies in his stomach are all gone! (His fears making him have butterflies) Earlier this week he asked if he could buy lunch at school. I gave him money and told him how it worked and he was so excited. That evening, I asked him about lunch. here is what he told me:

Levi, what did you have for lunch?

I don't know but it was gross. It looked like chicken on the outside, but it wasn't chicken on the inside.

Tuesday, September 01, 2009

Ahren has been potty trained for months. He got the hang of urinating quite easily, and finally got the poo-poo thing down as well. There was much rejoicing around these parts, because really, who likes changing the messy diaper of a large child. Not me!

In the past month he has started wetting his pants (not to mention the pee pee accidents involving falling over or not getting his pants down all the way). He doesn't wet them all the way, he just waits too long to go potty and ends up with a large wet spot in his pants. This has become very annoying. You can ask him if he has to potty and he will say No, only to wet his pants 5 minutes later. If you tell him to go potty he throws a huge fit. He is now consistently wetting his pants 1 to 3 times EVERY day. I am putting him in pullups for school just so the teacher doesn't have to deal with it. (Did you know they make them in a 5T size? Me either.)

Anyway, on Sunday, after the second accident, I had had it. He hates wet pants so I made him wear them. And then I told him he would get a bad rash, his toot was going to turn black and it was going to burn. (He can use his college fund for counseling...right?) He cried and cried, but I made him wear them for an hour. I was hopeful that this might have made an impression on him. Later that evening, I asked him if he had to go potty and he said No. I reminded him of the wet pants......and ten minutes later he peed his pants.